Ovarian Rhapsody: Wait, What? We’re All Done Here?

My chemotherapy is always on a Monday. This particular Monday is May 2.

No balloons. No fanfare. Just me and my husband and the final infusion needle affixed into my vein. Yes, it’s my very last chemotherapy appointment.

There it is! We’re at the finish line! Whee!

Whee?

I should be excited, but, frankly, I’m just tired. It has been 18 weeks since we started this mess, and now it’s come to a halt.

It’s hard to know how to feel.

Like 18 Mondays before, my journey to the hospital began at 7:45 a.m. A brisk 55-degree chill in the air; my blue-and-white-striped tote pre-packed with mints, hand sanitizer, tissues, Zofran anti-nausea medicine, my water bottle and the same granola bar I’ve had in there for the last three chemo sessions. I don’t even have to think about what’s in there.

I usually wear black yoga pants, a t-shirt and a comfy sweater of some sort, but this time I figured I’d dress it up a little and wear this purple tunic dress thing I love, my sparkly black hat and a necklace.

My physical presence in this world has been reduced — and that sucks. It’s a weird and unexpected reminder of my mortality.

We Uber to the NYU Ambulatory Center in Manhattan where we typically grab the world’s most perfect egg sandwich (it’s all about the bun) from the little cafeteria stand, but this time we’re running late — for no good reason. Maybe in some recess of my mind I wanted to delay this? Which makes no sense, but it’s all I got right now.

Upstairs on the 18th floor, I wait for my name to be called for the CBC blood test. I know exactly where to go, which door to open. I know the names and comforting hands of the phlebotomists. They know I’m a “tough stick,” and they’re always gentle.

As with every week, my temperature and blood pressure are taken. My weight is checked. But this time, for some reason, they check my height. “You are 5’8” and a half.”

“No, I’m not! I’m 5’9” and three-quarters.”

“Should we check on another scale?”

“Yes, please.”

And still. Five eight and a half. Six months after my first surgery in November, the last time my height was measured, I’ve shrunk AN INCH AND A FREAKING QUARTER. This disturbs me more than just about anything else that day.

Is there a reason for it? Is this yet another side effect of chemo? Sudden menopause? Old age?

The nurse shrugs her shoulders. Apparently, it’s not important. So I may never know. All I know is my physical presence in this world has been reduced — and that sucks. It’s a weird and unexpected reminder of my mortality.

Inside the exam room, my doctor shakes my hand as she always does — that firm, business-like handshake that immediately suggests, “I’m busy, my time is precious, but I’m here with you now and we’ve got this.”

“So! This is it,” she says as if she’s said this many times to many people. It’s hard to feel the finality of it. It’s been hard to envision the end, despite marking it off with a big X on a paper calendar I got just for this purpose. Cross. It. Off.

She asks, as she does every time, “How do you feel this week?”

I feel good but very tired, my toe infection remains until we can get through this last chemo and get my white blood count up to treat it, my blood clot is fine if I elevate my leg… I’m OK. But what about the cancer coming back? When do I need to start hormone replacement? What should I be eating? Should I still be taking glutamine for the neuropathy? And…

“We’ll talk more about survivorship in a few weeks. Let’s get through this last treatment.”

“Survivorship.” I let that word sink in. Such a strange term. Like something you would study, plan for — a state of being for a situation that’s actually out of your control.

My blood counts are okay to proceed. Thank god. I didn’t want to be turned away on this last day to have to come back another week.

When my doctor walks out, I don’t quite know how to feel. A little part of me wants to plead, “Doctor, wait! Don’t leave me! We had this! We had our whole plan, every day, our routine. I saw you every week and then every three! That was a shift, but we adjusted! Don’t leave me now. Where are you going? What will I do tomorrow?”

But I don’t. I head one floor down to the infusion center where I check in and wait for my name to be called. When they do, they lead me to the row of what I call “chemo cubbies” — nondescript, narrow little rooms with reclining lounge chairs for the patient and a hard plastic chair for your visitor. (Hey, we all have to sit here for five hours; you might as well make us all comfortable, no?)

Jan, one of my favorite infusion nurses, is my nurse on this final day. A joy. She’s easy, breezy and supremely competent — a true vein whisperer. And she’s serious about her job. Exactly what you want. I haven’t seen her in a while; she was on vacation, and I’ve had other nurses in the interim. Now, she’s clearly showing her pregnancy — she’s six months along. Life and death in one room together.

“You might experience a bit of PTSD.” Awesome. Can’t wait.

She covers herself with a blue paper smock before handling the drugs, lining the clear bags in a row. Pepcid, Decadron, Benadryl, Emend, Aloxi, Carboplatin and Taxol. Those last two are the actual chemotherapy drugs; the others are to get you ready for the chemo drugs.

My husband gets us bags of mini pretzels and ginger ales with crushed ice — my favorite hospital treat ever. I wonder if I’ll lose the taste for it when this is all over.

It’s already 10:30 a.m. It takes forever to get everything rolling. But once the needle is in and I’m hooked up to the drip drip drip, we’re good to go.

At 12:45 p.m., Adrianna shows up, taking the chemo-pal baton from my husband who has to run out for a meeting, but not before we shoot a quick video for posterity. We have to remember this day somehow, right?

Before sliding into my Benadryl haze, I order lunch for Adrianna and myself with my one free hand — chana masala bowls from the Bombay Sandwich Co. They’re amazing and messy, but who cares?

I rest my eyes at fits and starts, waking up to check Facebook, play Candy Crush or read a little. I can never do much of anything consistently, so I don’t try. Adrianna and I do manage to squeeze in a little bit of TueNight work and choose photos for the next day’s issue. Work distractions are a godsend.

The pleasantly peppy and preppie social worker passes by my chemo cubby. She’s popped in once or twice during chemo to check in on my mental health. She’s been gently pushing her Wednesday 5 p.m. group therapy sessions on me, but I just haven’t had the energy to make yet another weekly trek from Brooklyn (during rush hour?!) back to NYU. I’ve asked her for suggestions closer to home, but nada. I get the sense they want me to stay in the NYU family, which makes things a lot more convenient for them but also a lot less convenient for me.

The last time we spoke, she warned me that some of the hardest mental and emotional challenges will come after chemotherapy is over. That the chemo patient has been so focused on a regular routine to get through the months of hell, and when it stops it can be hard to cope.

“You might experience a bit of PTSD.”

Awesome. Can’t wait.

Right now, I don’t feel any of that. I’m still in the routine zone and thankful to look up and see the faces of my husband, my friend, my nurse and the people around me, keeping me distracted with love and snacks and a wide selection of stock photos.

So, we’ll see.

But for now, it’s over.

I watch the drug monitor count down the last seconds of drip into my veins. 10-9-8…with a loud, insistent beep, beep, beep.

Jan is busy, so another nurse removes the needle while I surf my phone. Distractions are everything.

And that is it. No certificate. No badge. I rip off my NYU wristband pretty much immediately.

At 5:52p.m., Adrianna and I catch an Uber back to Brooklyn. We made another little video where we woooo-ed a bunch on the sidewalk. Hooray for friends who know exactly what you need. A few other friends have planned a celebration in a few weeks; hopefully I’ll feel well enough by then, but who knows?

By then I will be in my “survivorship” phase and, ostensibly, a survivor.

As I was reading this i just kept saying “yes” over and over. You perfectly captured your thoughts, as well as mine, with your words. As scary as cancer & the treatments are, there is comfort in the routine. Then the routine is gone and you have to adjust to “a new normal”. That was the catchphrase around our home after my treatments ended and we said it consistently for over a year. I really was surprised at how much I thought about cancer, surgery, chemo, pulmonary embolism, Lovanox shots, my port, etc. Of course even after treatment ended, many of those things still had to be dealt with on a regular basis. So I guess I shouldn’t said I was surprised by the thoughts, rather what was surprising was the intensity of them and that they would come out of the blue. I wasn’t prepared and it took me a long time to allow myself to have the “moment” and move on. I’m still working on that. I think I foolishly thought I would reach the end of treatment, the ovarian cancer would be gone and things would quickly go back to “normal”. Now that I am 5yrs post treatment, looking back on the entire experience I’ve come to realize that “the new normal” is now “normal”. I sit back often and sort of marvel over the entire thing and can’t believe that my family & I got through it. As crazy as it sounds, I’m thankful for the experience, because the lasting impact has been more positive than I could have imagined! My thoughts are with you as you discover your “new normal”. Thank you for putting your experience out there and sharing with all of us!!

We finished our treatments about the same time. A couple of resources that I have found incredibly helpful as I embark on “survivorship:” This book outlines how to approach life after cancer. It’s the closest ting I have found to the “What to Expect” guide: https://www.amazon.com/Picking-Up-Pieces-Forward-Surviving/dp/0813540364
Another is Immerman’s Angels. They match you up with a mentor who has dealt with the same diagnosis as you. I wish someone would have mentioned this to me as I began treatment, but they have matched me with some who has been incredibly supportive as I enter “survivorship.”
Best of luck to you as you recover from chemo. I hope you continue to keep us posted on your progress, hopes and fears.

Margit, your writing is amazing and your journey inspiring! I see your last Overian Rhapsody post was late June. I hope you’re doing well as you’ve moved into the survivorship phase. I was led to your blog by a dear friend (Terry G). She’s been part of my support network since being diagnosed with endometrial cancer in early May this year. I’m halfway through my 4 sessions of a very similar cocktail of chemo drugs. Going every 3 weeks, as you were toward the end, does allow time for recovery but as soon as I start feeling “myself” it’s time for another treatment. I particularly enjoyed the entry on hair loss and wigs. I bought a couple of inexpensive wigs – one super short pixie number and a second longer super curly version closer to what was my hair. It’s too freakin’ hot to wear them though! For now I’m opting for those chemo caps or head wraps. Maybe I can transition to wigs in the fall. . . Your posts are so authentic and convey almost every high and low I’ve experienced as well. The fatigue is so overwhelming at times and I can now predict horrendous leg cramps about 48 hours following my treatments. Walking several blocks sometimes feels like an uphill battle, literally. But I keep focused on August 24, which is currently scheduled as my final session. Thank you so much for sharing your insights, and in such a brutally honest yet humorous way. It’s been so helpful to me in my cancer journey.

Margit’s Note: You Glow, Girl

Hey you! We’re back with a new issue and it’s a hot and spicy scorcher. Our theme this week is Glow — as in “Glow little glow worm glimmer, glimmer.” As in fiery pink and orange lights blazing across a June night.